By: Grant Nick

After experiencing Sudden Unexplained Death in Childhood (SUDC), the shock and grief that follow, along with the many unanswered questions families grapple with, can feel like navigating a maze of grief, uncertainty, and unanswered questions. During this challenging time, you may meet a genetic counselor, but what do they actually do?

You would not be alone if you had this question. Many families are curious about how genetic counselors fit into these situations. A genetic counselor’s role is not just about genetics, but about guidance, support, and presence in the midst of uncertainty.

What Do Genetic Counselors Actually Do?

They Hold Both a Medical and Supportive Counseling Role

Genetic counselors are healthcare professionals with specialized training in genetics and counseling. They help families understand whether genetics may have played a role in a child’s death and guide them through the genetic testing process.

A genetic counselor may review your family medical history to look for patterns that could suggest an inherited condition. They may review relevant medical records, autopsy findings, and, when appropriate, the circumstances surrounding the SUDC event. They then can discuss whether genetic testing may be helpful for your child or other family members.

Once testing is completed, genetic counselors help interpret the results and explain what they may mean for your family. They will discuss whether identified genetic findings could affect the health of parents, siblings, or future children. They then can help connect families with additional specialists, resources, or support services when needed.

Even when genetic testing does not identify a cause, meeting with a genetic counselor can help families better understand their options and determine whether future advances in genetics may provide additional answers.

Supporting Families Emotionally and Medically

Genetic counselors provide emotional support in a unique space. They acknowledge the grief that accompanies the mystery surrounding SUDC and sit alongside families as they wrestle with questions such as, “Why did this happen?”

Their training helps them be present in uncertainty and validate emotions without rushing families toward answers that may not yet exist. While genetic counselors are not therapists, they provide psychosocial support while helping families navigate complex medical information and decisions.

Genetic counselors can also equip families with practical guidance. This may include discussing testing options for other family members. They can help families navigate insurance considerations, testing logistics, and referrals to additional specialists when appropriate.

Translating Complex Science into Understandable Information

Being introduced to the world of genetics can feel overwhelming. New terms such as genes, variants, VUS, reanalysis, and whole genome sequencing may be unfamiliar.

Throughout a session, genetic counselors explain these concepts in plain language, move at a pace that feels manageable, and check for understanding along the way. Their goal is for families to leave with a clear understanding of the information being discussed.

They can also address common misconceptions. For example, finding a genetic variant does not automatically mean it caused a child’s death. Likewise, a negative genetic test result does not necessarily mean genetics played no role

Understanding Results: Positive, Negative, and Uncertain Findings

Genetic testing can produce several types of results.

Sometimes a genetic cause is identified that may help explain a child’s death. In other situations, testing may be negative, meaning no reportable variants were identified. Families may also receive a Variant of Uncertain Significance (VUS). A VUS is a genetic change that has been identified, but there is currently insufficient scientific evidence to determine whether it contributed to the child’s death or is unrelated. As more research becomes available, the classification of a VUS may change over time.

Receiving a negative or uncertain result can sometimes feel disappointing, especially when families are desperately seeking answers. However, these results do not necessarily mean the search for understanding is over.

Walking Alongside Families Without Overpromising Answers

Genetic counselors are trained to be present during some of life’s most difficult moments. They help families balance hope with realistic expectations.

This means acknowledging that many SUDC cases remain unexplained even after extensive testing while also recognizing that scientific understanding continues to evolve. Genetic counselors help families understand both the possibilities and limitations of current knowledge.

The Value of Genetic Testing Beyond Results

Even when genetic testing does not identify a cause, many families find value in knowing they explored available options, contributed to scientific understanding, and received information that may help guide future care for relatives. 

For some, the process itself provides reassurance that every available avenue was considered. Families can pursue genetic testing at a pace that feels right for them. There is no “correct” timeline. Some families seek information soon after their loss, while others may not feel ready until months or years later.

Why the SUDC Foundation Supports Genetic Research

The SUDC Foundation supports postmortem genomic testing and research because genetics is one of the most promising areas for understanding unexplained childhood death.

While not every family receives an answer today, each family’s participation contributes to a growing body of knowledge that may help future families and advance efforts to better understand SUDC.

Through research partnerships, scientific collaboration, and family participation, new discoveries continue to emerge. Every family who chooses to participate helps move the field forward and brings us one step closer to understanding the causes of SUDC and improving support for future generations.

Questions Families Affected by SUDC Can Ask Their Medical Professional

Do we know what caused this? Could it have been genetic?

Possible answer: Yes, it is possible. Certain cardiac conditions, epilepsy-related disorders, and other genetic conditions may contribute to some cases. However, testing does not always provide a clear answer.

Should genetic testing be done and what might it tell us?

Possible answer: Testing may identify a potential explanation, reveal uncertain findings, or be negative. Even when testing is not definitive, it can still provide valuable information for family members.

Are our other children or family members at risk?

Possible answer: If an inherited condition is identified, other relatives may also be at risk and could benefit from screening or additional testing.

Could this happen again in a future child?

Possible answer: One of the benefits of identifying a genetic cause is that it may help clarify recurrence risks for future children and other relatives. While every family’s situation is unique, this information can provide valuable guidance for family planning, reproductive decision-making, and discussions with healthcare providers.

If testing is uncertain now, should we revisit it later?

Possible answer: Yes. Retesting may provide new information as genetics advances and our understanding of genetic variants continues to improve.

Even during these unthinkable times, medical professionals may not always have all the answers. What they do bring is knowledge, compassion, honesty, and support. When navigating genetic testing after an SUDC loss, families should feel comfortable asking questions, seeking support, and revisiting information over time as science continues to evolve.

Why the SUDC Foundation Supports Genetic Research

The SUDC Foundation supports postmortem genomic testing and research because genetics is one of the most promising areas for understanding unexplained childhood death.

While not every family receives an answer today, each family’s participation contributes to a growing body of knowledge that may help future families and advance efforts to better understand SUDC.

Through research partnerships, scientific collaboration, and family participation, new discoveries continue to emerge. Every family who chooses to participate helps move the field forward and brings us one step closer to understanding the causes of SUDC and improving support for future generations.

One way the Foundation supports these efforts is through its Postmortem Genomic Testing (PMGT) Program, which provides eligible families access to advanced genomic testing at no cost. While testing may not always provide the definitive answers families seek, it can offer valuable information for families and contribute to ongoing scientific discovery.

Learn More
If you would like to learn more about genetic counseling, the SUDC Foundation’s Postmortem Genetic Testing Program or their available support services, please visit:

SUDC Foundation Complimentary Postmortem Genomic Testing (PMGT) Program
Request Support from the SUDC Foundation Family Services Team
Find a Genetic Counselor (National Society of Genetic Counselors Directory)
SUDC Foundation Research Initiatives

About the Author
Grant Nick is a master’s student in Genetic Counseling at Southern California University of Health Sciences and a Summer Intern with the SUDC Foundation. He currently works as a Genetic Counseling Assistant at GeneDx and is passionate about helping families navigate complex genetic information with compassion and clarity. Through his work with the SUDC Foundation, Grant has developed a particular interest in supporting families affected by Sudden Unexplained Death in Childhood (SUDC) and advancing understanding of the role genetics may play in unexplained childhood death.